A woman named Joan raised her hand and shared the following:

 I am involved in a book club that meets regularly at the library. My daughter who also lives with me will stay home with Mary so I can attend. Mary is in her seventies and is deaf and blind. One day my daughter wasn’t able to do that for me. I asked Mary (using hand signing) if she would like to go to book club with me. Mary quickly asked, “do they have anything to eat?” I said, “we always have cookies and coffee” to which she quickly replied, “I want to go.”  So off we went. Mary sat next to me and munched away but also occasionally signed with me to find out what people saying about the book.

When we got home my daughter was back and Mary could not wait to tell her about book club. She said (hand signed) there was a story about a woman who had left home at a young age and did not return until her father was dying. She went on to say it was just like her – – she left home and went to a school (Fernald) and did not see her father until he was almost dead.
 Now Mary goes to book club with Joan all of the time.

And the other people in the group are asking how hand signing works.

View less.

He had his eye on Mary, the Director of the local YMCA, as someone who would be great to match up with an individual he knew who was somewhat isolated. He was a bit hesitant to approach her given the very busy life she had – not only as the Y Director but also as a parent and person involved in many community organizations. Finally, he decided to talk to her. She too was hesitant – would she really be able to find time in her life to do this? After some time passed she called Tom and said she would give it a try.

Soon after Mary was introduced to Sheila who lived in a small apartment. Sheila could take care of herself in many ways but she spoke very little. One thing they had in common was that they liked to bake. So Mary started to visit for a few hours every couple of weeks and they baked muffins or cookies and had coffee together.

About four months went by and Tom ran into Mary at a store. She pulled him aside and said, “Tom, I can’t tell you how grateful I am for helping me to get to know Sheila. I love going to see her. We bake together and share the goodies we make over coffee. It is a wonderfully quiet time that slows me down. I always leave feeling calm and in a better place as I head back to the hubbub of my life.”

View less.

When I met Sharon, there were two things she wanted to be sure I knew, 1. She was of Cape Verdean descent and 2. She was a Christian.  She also felt it was important for me to know how proud she was that she had a bible and read it every night.  Soon after that I discovered Sharon could not read but I understood how significant it was for her to look at the pages and the strength that gave to her.

Due to medical issues with her caregiver, Sharon was transferred to a new shared living home in New Bedford.  Sharon had lived in various homes through multiple agencies for the past ten years.  Now residing in New Bedford, Sharon inquired about a local church where she attended a Bridges to Faith Christmas event.  Sharon said she enjoyed the church very much because it had lively Christian music, singing, dancing and she recognized many of the members as there was a large Cape Verdean population.  She said she “knew them when she lived with her parents”.  Sharon began to attend the new church and the agency helped to support the change.  Her respite provider would drive twenty minutes each way to bring her each Sunday.  The Program Manger would also provide transportation as this became the highlight of Sharon’s week. Sharon developed many natural friendships at church and before long she met a new friend Christina.  Christina not only became her “faith companion”, she became so much more.    Christina was an active member of the church.  She was part of the choir, the coordinator of events and missions for the church and leader of Woman’s Group.  Sharon wanted to participate in religious activities offered by the church and not just attend Sunday Service.  Sharon asked if she Christina could take her to bible study and Christina agreed.  Sharon started to go to Bible study every Thursday.  The pastor would often have someone read the verses out loud as he understood that Sharon could not read.  When I asked Sharon how she was reading the bible every night, she explained she was holding it and looking at it.  “God made the words clear for me” she replied.

The next thing Sharon wanted to do at her church was become part of the choir. The church took their choir very seriously and only the most devoted church members were allowed to even audition.   Sharon was DETERMINED to be on the choir. She asked if she could attend the practice as she knew that would be the only way she could learn the dances and the words to the songs.  Christina picked up Sharon every Wednesday to attend choir practice.  For six months Sharon NEVER missed a practice.  Any time there was a new song, Christina would “you tube” the song for Sharon so she could learn the words as she knew she could not read.  Sharon practiced day and night listening to the videos.   The day had come where Sharon became an official member of the choir.  Sharon extended an invitation to all she knew to watch her sing on stage for the first time.  Sharon filled the church with all her friends she invited to see her sing.  It is a very small church and the pastor joked that he would invite his friends and family but it wouldn’t pack the chairs like she did.

Sharon now has a new family. This is not a “paid family”, it is not paid staff support but people who embrace her for who she is.  Sharon attends all the parties, cook outs and birthday parties.   Sharon has never missed a Sunday, a bible study or choir practice.  She rang in the New Year attending a party on New Year’s Eve with all her new friends.  Sharon no longer has to say,” I want you to know I am a Christian”.  She has forever marked her identity, made her religious preferences known, paved her own way and she is a Christian fully embraced by her church community.

View less.

On the next visit she spoke of the intricacies and hardships of ice-fishing that her husband had done before his death. Week after week, hooking rugs and ice-fishing.
Angered, he said to friends,
“I can’t go on with this
interminable hooking rugs
and ice-fishing.”
One day as they sat
in the nursing home cafeteria,

she going on, he bored and vexed
with hooking rugs and ice-fishing,
the room
went silent, air turned
a luminous shade of green, hooking
rugs and ice
fishing stopped. She leaned over and said, “I could not have done this without you,”
then on again with hooking rugs
and ice-fishing. Soon after she died. At the funeral relatives said to him, “Thank you, all she ever spoke about was you.”

View less.

A discussion on friendship at the Western MA Family Leadership Series confirmed what Ingrid Flory has experienced as both a professional and a parent: most families know how important having friends — both with and without disabilities — is for their children. But they are stumped on how to make it happen.

So she reached out to another Family Leadership Series graduate and parent, Brittany Antuna, and with the support of the Creating our Common Wealth project and Widening the Circle, they developed Supporting Friendship: A Workshop for Parents, By Parents.  The goal of the workshop is to provide parents with concrete tools and strategies to facilitate friendships for their children with disabilities.  It outlines steps starting with creating membership, and walks parents through how to identify and capitalize on their child’s gifts and interests, and how to find others that share those interests.  Ingrid and Brittany piloted the workshop in the fall of 2016. Based upon the feedback received, they are now working to expand the workshop so that it will apply to adult family members as well as children, and incorporate different cultural perspectives. Later this spring, they will be collaborating with MFOFC to conduct a “train the trainer” so that parents across the state can present this workshop in their community and provide coaching and support to participants in follow-up to the workshop.

 Tips:

• Invite others –both into your project and your life! Collaborating with other family members and professionals has been key to this project’s success – and has created friendships along the way.
• When working with families, emphasize shared experiences. There is power in acknowledging that although you may have done more research than your audience, you still share similar challenges in your role as a parent, family or community member.

Resources: 

• Community Connecting Toolbook: http://www.hsapress.co.uk/media/9661/ccminibookfinalweb.pdf
• What makes a good life? Lessons from the longest study on happiness: https://www.ted.com/talks/robert_waldinger_what_makes_a_good_life_lessons_from_the_longest_study_on_happiness
• Voices of Friendship: https://youtube.com/watch?v=g6Yp4MzNQMk

Lessons Learned:

• Sometimes families need time and emotional support just as much as information. The biggest piece of feedback from the pilot was that the parents wanted to come together regularly to support one another and dedicate time to implementing the tools provided at the workshop.
• Find others to fill in your gaps. Ingrid and Brittany first developed the workshop for families with school age children, because that was more comfortable to them. They are now filling in gaps in their presentation by reaching out to parents of adult children and of different cultures.
• Pilot your product/presentation and incorporate constructive feedback

Would you like more information?  Contact Ingrid at .

 

View less.

Service Coordinators are often faced with high caseloads and countless organizational tasks. It can be difficult to look beyond the deadlines and paperwork.  Kelley thought understanding social inclusion and valued lives is a process, it doesn’t happen overnight. So to start, she scheduled a viewing of the documentary at the office and offered popcorn and sodas. After the viewing, staff shared their thoughts. They found the documentary to be thought-provoking and inspiring. Social Role Valorization and the Principle of Normalization were concepts that staff latched onto and they were able to think of real life experiences that illustrate their importance. The historical perspective provided throughout the documentary helped staff to see themselves as part of a larger movement as opposed to fulfilling a role narrowed by administrative duties. We all need reminders to look beyond the administrative tasks and think about the individuals we support.

Tips:

• Look for innovative way to share information; i.e., make it fun – like showing a movie and sharing popcorn
• Offer chances for staff to share their thoughts and ideas for how to implement what they have learned
• When encouraging people to reflect on a major issue, give them the time needed to think about the issue and get a real feel for it
• Keep the schedule simple and to the point. Share information that is pertinent to the topic and stay focused on what the point of the exercise is
• Let them see your passion. It is contagious.

Resources:

• To purchase the documentary and other review material: http://rtc.umn.edu/valuinglives

Lessons Learned:

• Training on the topic of social inclusion and valued lives is a process, no one training or session is sufficient
• Meet your staff where they are at; bring them trainings and materials that resonate with them
• Conduct frequent check ins with staff to see how they are implementing the concepts of valued lives in their work
• Do not combine exercises that are intended to be reflective and thought-provoking with administrative meetings and staff meetings. Set aside a special period of time and give people permission to “not work” so that they can free their mind, think and reflect
• Everyone will not be in the frame of mind to explore new ideas. But there will be people who appreciate the invitation to participate in this kind of activity and who need it just as much as you do. They will take what they learn and run with it. And they will be thankful for the opportunity.

Would you like more information? Contact Kelley at . 

View less.